Hi Fiona
How did you get on yesterday? Let me know.
Mal x
Hi Fiona,
I was also wondering how you got on yesterday - hope you are ok!!?? take care and look forward to meeting up soon.
Vicky
Hi Mal and Vicki…
Typed long reply Monday evening and lost it so was demoralised and went to bed…only to end up in bed most of yesterday with stomach cramps and nausea. Explosive system if you get my meaning. Still not well really. Just like first round of Xeloda but not quite so debilitating. Thank goodness it’s over…
Anyway…Monday results - Yippee all clear! Relief!
Thanks SO much for your concern girls. Good day that day - last tablet swallowed and clear scan and then Jess my v nearly 13 yr old txt me saying she had A* in French Course work…chip off the old block Ha Ha…So, whizzed straight to Sainsbury and bought yummy choc cake…Thorntons. Pricey but well worth it to celebrate.
Vicki…Do you have anyone going with you for last Epi?? More than happy to come with you at any point…
Had last day of programme at Beechwood. Been really good for learning how to relax and just cope with dx of BC etc… Staff are fab. Have booked myself on complimentary treatment next Friday…Might do the Tai Chi on a Tues evening. Apparently good for the body and mind…timeout really for ME!!
Anyway will catch up over next few days, going to bed - pretty tired now 12:30am… Been awake since 4am as slept so much yest it’s upset my body clock.
Hugs
Fiona x
Brilliant news Fiona. It’s absolutely nerve racking waiting to see the onc for results, isn’t it? Anyway you can forget about it now.
And your last tablet too - yippee - rads next. Have you got a date for the planning session yet? You certainly suffered more than I did on xeloda so I bet you’re glad to see the back of them.
I had my last rad yesterday and it was so strange walking out of the hospital. A sort of empty feeling after nine months of hospital appointments and treatments. Go back for a check-up in six weeks. So now I’m going to sleep for a week and then I’ll be on a get fit campaign.
Take it easy.
Mal x
fantastic news Fiona!!! so please for you.
I have my father in law coming with me this week coming. he had cancer 12 years ago and has been fantastic support as knows what chemo’s like!!! I am hoping the CMF is not as bad.
I go to beechwood tomorrow for first session so will see what happens.
speak soon!! hope you enjoyed your choc cake!!
Vicky
What’s this Beechwood you’re talking about?
Hope you’re OK and enjoying life.
Have good week-end.
Mal x
Hi,
Beechwood is a cancer care centre and they do sessions and support for anyone who is effected by cancer. I went today and signed up for an 8 week course which has relaxation and support and therapies such reki, aromatherapy too. plus support for families and friends.
I was very impressed on the range of support and the facilities. Its on the Bridgehall estate in stockport. If you live in stockport you can refer yourself. they do courses for when 1st DX and others on after treatment and moving on, returning to work and the likes. they have macmillian info there too which is really good.
Are you in Stockport??
vicky
Hi Vicky
I’m not in the Stockport area but North Manchester. I’ve not been offered any help like this. I could have done with it a few months ago but now I’m finished treatment and back at work I don’t feel as though I need it. Would have been good though when I was having my black moods. I don’t think they could help with my paranoia over every little lump and bump!!
Are you under Christies as well?
Mal
we are lucky to have beechwood, I am hoping to get as much out of it as possible!!! I have those days when my bust are really sore and under my scar I can feel hard lump!!
I am under Christies but like Fiona have chemo at my local hospital - stepping hill but will go to The christie for radiotherapy.
how are you coping at work if you don’t mind me asking? Are you full time?
I am wanting to go back full time but after reading about the hormone therapy s/e I am not sure how I will cope??
Vicky
Hi Vicky
One of my colleagues at work had her treatment at Stepping Hill. She’s 2 years out now and doing fine. I had all my treatment at the Christie and they were marvellous. The worst thing was the parking!
I went back to work part-time at the beginning of September after my last epi. Looking back it was a bit too soon and I often felt really rough but it was the right thing for me as I was climbing the walls at home and it gave me something else to think about other than BC. I’m still working the same hours (about 22 a week in the mornings) but am planning to start increasing my hours in about 3 to 4 weeks. There’s no way I could have coped with full-time, I just hit a brick wall at lunchtime and had to go home for my afternoon nap. Now rads are over I’m already feeling as though my energy levels are rising but am still going to take it easy for a while.
Hormone therapy - which are you going to be taking? I started Femara at Christmas and the first week felt awful. It was like being back on chemo and I couldn’t see how I could manage for 5 years, but then the SE wore off and now I have none at all.
Where are you up to with your treatment? Hope you’re keeping OK through it all.
Hope you’re still celebrating Fiona.
Mal
Hi Mal,
I am only 3 in on epi - have the 4th on monday then on to the CMF!! not sure how I will cope on the two weeks on two weeks off but I have fantastic inlaws who look after us all!!!
I don’t know what hormone treatment yet - its the one bit at a time thing!! I don’t really know much about CMF really so expect that I will get this next time I go.
I am part time and am requesting to go full time as extra hours have come up and with the current lack of jobs thought would grab them. I have a 2 year old and we had previously thought we would have more but no longer so I want to earn more so we can have more, travel and move to bigger house. I might be mad and don’t think if I get the extra hours that it will be straight away, I want to get into it gradually. maybe by xmas I could start to go full time.
Can I ask what happens once radio ends - do you run happy away? I just am in need for information, I hate this drip drip of info. I know the internet is dangerous but just reading others posts really helps.
I am keeping well other than really heavy period, epi is not my friend (is it anyones?) and has caused major sickness and resulted in nutrophiles (SP?) dropping to 0.1!! so ended up in isolation for 4 days which I hated so have the extra jab which seems to help plus they decreased my does by 20% which I as so thankful and made it more bearable!!! I am hoping to get the ball in motion to return to work when I know how I deal with CMF… what was your second chemo drug?? I am on arm 1 of the trial sods law really. the reason I signed up was hoping for arm 4 and ended up with the longest but in reality its prob best for my family.
As I work for local authority I need to sort out occ health which can take time so poss back to work slowly by april, chemo ends end of may then 4 weeks of radio (how do they decide how long??? as seen some women more than me and others less - I don’t expect you to know sorry for all questions but sometimes I have to write them down otherwise they are gone forever with my chemo brain!!).
sorry for rambling on - goodness knows how I will actually do my work when I get back. should be interesting!!!
Vicky
Hi Vicky
Good luck for your last epi tomorrow and hope it’s kind to you. I found the 4th the easiest by miles hopefully you’ll be the same.
So many questions!!
I was allocated Arm 4 of the trial and so had the xeloda tablets like Fiona. Wasn’t too bad on those, just nausea, and that’s when I returned to work. Another thread that I have been posting on since last summer had a girl who went onto CMF and she found it much easier than epi. She was still tired and had taste problems but found that CMF didn’t ‘mess with your head’ like epi.
After rads? I know a lot of people feel lost and struggle and I can understand that. Coming out of Christies on Wednesday I felt lost and empty somehow. They wish you well and say 'check up in 6 weeks’and that’s it. After the whirlwind of the past few months I suddenly have no appointments on the calendar and it’s weird (but very nice). Mentally I am feeling more positive than I have for months and am planning loads of stuff for this year - a big party/charity fundraiser for the end of March, a few days in Spain middle of February and hols at Easter and summer. I’m 56 and am also planning to take early retirement his summer followed by a BIG holiday. But I can understand people feeling as though the safety net has been whipped from under them, especially if they don’t have hormone therapy.
I too work for the local authority and Occ Health were a waste of time. Basically they left it up to me when I returned to work. Don’t rush back to work. Take it easy for a while and then ease back in gently. I’m lucky 'cos I only have to work until summer and then a life of leisure!
Keep well
Son just arrived!
Mal
sorry for all questions - I’m like that -drives people crazy!!!
sounds like you have a few thing to look forward to - I really want to plan a holiday asap for the same reason - would be nice to have something other than hospital appointments on the calendar!!!
I don’t want to rush back to work but 6 months full pay end is april and I can’t really afford half pay as nothing to put in place of missing half. We have kept our children in childcare so to keep the place and to give me that break (its only one day a week). I am 30 and its a long time off retirement so need to get a few years under my belt before I can plan that. hope you have a fantastic break though!!!
well have to pack for up sticks and move in with inlaws for a week.
take care and fingers crossed that 4th epi is as easy as can be.
Vicky
Hi all,
Sorry not been on…gone down with one hell of a cold and cough. Really chesty - it hurts to cough. Typical manage to last out 5 months without too much of a cold and it hits at the end,just when I want to get on and do things. Spent all day in bed…ached like anything
Vicki - how did last epi go…thinking about you. Had call from Sam (Trial nurse at SHH) to see how things were and I asked if you were there so hope she passed on my good wishes to you. Are you at In laws in Bramhall now? Could pop round to see you when got rid of this cold??
BTW, asking questions,I believe is healthy, so don’t apologise.
Mal, Beechwood was really good for getting me to relax, or rather teaching me about how to take time for me. Each pm session is a relaxation class learning, or rather practising visualisation. It’s a charity run centre. We had a group of 10 all at different stages of Cancer…the programme was about learning to come to terms with diagnosis/mind and body prog. Meeting someone with secondary cancer was hard at first and made me realise just how big a deal this disease is., and yes it did freak me out and I had a hard time., but with the counselling sessions you have (1:1 basis) I have come to terms with it…and perhaps I needed to go through that to come out the otherside with a positive attitude. Beechwood is all about being positive. They do other programmes as well. I’m hoping to go on to the next one…Moving on…sometime in April.
I’m sure you could go too, as in my group, 2 came from Oldham and I think another came from Manchester area.
So Vicki, how did your first day at Beechwood go? Are you having Reiki., reflexology or massage?. I had reflexology for the 7 weeks, but am going back this coming Friday for a Reiki session. (have to pay for these sessions though).
Also, going to see Homeopath this morning…costing heaps (not told hubby yet) as wanting to get my immune system up and running and help prepare me for the radiotherapy.
Had Tamoxifen prescribed for me and will start soon (not sure exactly when but prob in next few weeks) and not really looking forward to it as reading up on SE’s and the sure knowledge it tends to put weight on. I’ve already put 2 stone on through crap*y eating habits, half the time to stop the nauseaus feeling esp when I was on Epi, and then afterwards through lack of will power as now had the taste for biscuits, cake., carbs etc… Trying really hard not to eat ‘naughty’ things but wasn’t expecting crummy cold and unbelievable lack of energy these last few days.
Anyway, enough of gloom and doom me…going to get yet another cup of tea to keep me going. Been up since 04:30, inhaling etc and time to catch up on here…
Half hour or so before brood starts to wake up for school, so will go and make sandwiches.
Hugs and love to all
Fiona
Hi there
So sorry you’ve got a chesty cold and are feeling grotty. Tiredness, I think, is par for the course at the moment. I’m just over a week past rads and thought I’d be skipping along by now. Ha ha!! Still having an afternoon nap but will have to try and extend my hours at work soon.
Beechwood sounds really good. I could have done with something like that a few months ago but now I do feel as though I’m moving on. Need to move work higher up my priority list for the next six months, though to be honest, my heart’s not in it any more.
No after effects of rads thankfully. Looks a funny colour but feels fine.
I was like you dreading taking the femara tablets 'cos I’d read some real horror stories, but after the first week I was OK. The first week was like being back on chemo and I felt dreadful, but my body soon got used to them. Some SE don’t kick in for a few months so I’ll have to wait and see. I know three people who are taking tamoxifen (and have been for a few years) and they’re all fine on them. Hopefully you’ll be the same.
Let me know what the homeopath said. I’m on all kinds of vitamins and supplements now. Still swear by the manuka honey and will carry on with that. Trying to eat healthily too. After losing a stone on epi (couldn’t eat due to sore throats, mouth ulcers, nausea and lack of taste)now I make up a bowl of salad and nibble on that (Yuck). Miss my cheese more than anything else. Did your onc tell you to keep to a low dairy or dairy free diet?
Hope your epi went OK Vicky. And no don’t apologise for asking questions.
Take care
Mal x
Hi Mal,
No onc didn’t suggest any diet as such just a healthy one! I have reduced the dairy by a long way but if I have choc, it defeats the object. Also, some things have lactose, skimmed milk etc etc, in the ingredients, but haven’t cut that out yet.
I’m now 1.5 stone heavier! Although lost 5lb when on Epi …all the bad eating habits came back, (all the nice clothes I bought at Next etc earlier don’t fit comfortably any more), and it’s tough getting the biccy’s etc out of the cupboard. Shouldn’t buy them…but the will power goes, esp when feeling this crummy with debilitating cough, bunged up nose, headache and unbelievable fatigue. Hands just not coming back to normal at all. Thumbs and two fingers (peter pointer and middle finger ha ha )cracked at finger tips. difficult to type or do anything. I really thought that hands would recover but seems not…!
I JUST WANTED TO FEEL WELL AFTER CHEMO…supposed to be going to Ironbridge tomorrow evening for weekend with several other families but I really just want to stay here aand mope and feel sorry for self!! I’m allowed to have downers now and then.
Enough of my moping…sorry
Glad that all the rads etc has finished and not too bad SE’s. Helps to know that you can get thru this without too horrendous a problem.
Waiting to hear from Homeopath. One thing def, low on Mg, so stir
-fried kale last night. Munching almonds, bananas and avocados. and trying to get vit c down to help fight this cold.
Have you changed your diet radically?
going to try and have doze b4 chn come in…not a chance after that
Hi Fiona
You are on a downer, aren’t you?
I can sympathise. When the end of chemo is in sight you build up to that and think that you’ll be skipping along with loads of energy etc. but that’s not the case. I read somewhere that for every month of chemo you need a month of recuperation. I’m sure that’s right.
Mal
For Snottraggs
I had 6 months full pay then as I went onto 6 months 1/2 pay I discovered I was entitled to Incapacity Benefit.
This work out at £300 per month so with the 1/2 pay, not much less than my full pay.
thanks for that adejude I will look into it.
Am on a downer today - forgot hospital follow up appointment yesterday and thought had person coming to see me today but not turned up and now don’t know if I put it down right??? going mad and fed up!!!
Hi there
Hope you’re feeling better today with the sun shining Vicky. How did your epi go? Are you coming out of the fog now?
And Fiona, hope you’re out of the black hole now.
Take it easy
Mal x